Using Twitter for Data Collection With Health-Care Consumers

Background: Twitter is one of the most popular social media platforms. The growing use of Twitter by health-care consumers creates a novel venue to understand patient experiences. To understand the potential for this platform to be utilized in patient- and family-oriented health research, this study reviewed published literature on the use of Twitter in health research. Methods: In collaboration with the research team, a research librarian designed and implemented a search strategy in eight databases. Primary and secondary screenings were conducted using predetermined criteria by one reviewer. A second reviewer verified screening decisions in 10% of the studies. Evidence tables were created to synthesize across the following study elements: research design, data collection techniques, analytic approaches, and author’s insights on Twitter as a data collection method. Descriptive narrative analysis was used to synthesize data. Results: The search strategy captured 618 articles; 233 were eliminated in primary screening and 366 articles were eliminated during secondary screening. Verification by the second reviewer resulted in very good agreement (κ = .980). Seventeen articles were included in the final data set. Synthesis across the studies demonstrated that Twitter is currently used to search and mine research data, while active recruitment strategies on Twitter are just beginning to emerge. Conclusion: The novelty of Twitter for study recruitment and data collection with health-care consumers presents advantages and challenges that differ from traditional methods of data collection.

[1]  A. Rajić,et al.  A scoping review of scoping reviews: advancing the approach and enhancing the consistency , 2014, Research synthesis methods.

[2]  J. Morse Critical Analysis of Strategies for Determining Rigor in Qualitative Inquiry , 2015, Qualitative health research.

[3]  H. Arksey,et al.  Scoping studies: towards a methodological framework , 2005 .

[4]  Deborah Finfgeld-Connett,et al.  Twitter and Health Science Research , 2015, Western journal of nursing research.

[5]  Charlotte Emma Hilton Unveiling self‐harm behaviour: what can social media site Twitter tell us about self‐harm? A qualitative exploration , 2017, Journal of clinical nursing.

[6]  Jon-Kar Zubieta,et al.  Real-Time Sharing and Expression of Migraine Headache Suffering on Twitter: A Cross-Sectional Infodemiology Study , 2014, Journal of medical Internet research.

[7]  Ara Darzi,et al.  Tweets about hospital quality: a mixed methods study , 2014, BMJ quality & safety.

[8]  A. Holton,et al.  Twitter as a source of vaccination information: content drivers and what they are saying. , 2013, American journal of infection control.

[9]  Zachary F. Meisel,et al.  What do patients say about emergency departments in online reviews? A qualitative study , 2015, BMJ Quality & Safety.

[10]  Claire Holt,et al.  Emerging Technologies: Web 2.0 , 2011, Health information management : journal of the Health Information Management Association of Australia.

[11]  G. Eysenbach Infodemiology and Infoveillance: Framework for an Emerging Set of Public Health Informatics Methods to Analyze Search, Communication and Publication Behavior on the Internet , 2009, Journal of medical Internet research.

[12]  Margaret J. Pitts,et al.  Upward turning points and positive rapport-development across time in researcher—participant relationships , 2007 .

[13]  J. Hewis Do MRI Patients Tweet? Thematic Analysis of Patient Tweets About Their MRI Experience. , 2015, Journal of medical imaging and radiation sciences.

[14]  A. Coustasse,et al.  The Emergence and Potential Impact of Medicine 2.0 in the Healthcare Industry , 2012, Hospital topics.

[15]  K. Gordon,et al.  Epilepsy in the Twitter era: A need to re-tweet the way we think about seizures , 2012, Epilepsy & Behavior.

[16]  Atsushi Tsuya,et al.  Do Cancer Patients Tweet? Examining the Twitter Use of Cancer Patients in Japan , 2014, Journal of medical Internet research.

[17]  S. Ramagopalan,et al.  Using Twitter to investigate opinions about multiple sclerosis treatments: a descriptive, exploratory study , 2014, F1000Research.

[18]  Richard D Riley,et al.  Preferred Reporting Items for a Systematic Review and Meta-analysis of Individual Participant Data: The PRISMA-IPD Statement , 2015 .

[19]  Atsushi Hozawa,et al.  Cancer patients on Twitter: a novel patient community on social media , 2012, BMC Research Notes.

[20]  Brian H. Spitzberg,et al.  The Complex Relationship of Realspace Events and Messages in Cyberspace: Case Study of Influenza and Pertussis Using Tweets , 2013, Journal of medical Internet research.

[21]  M. Breckons,et al.  Twitter: a viable medium for daily pain diaries in chronic orofacial pain? , 2015, BDJ.

[22]  Michelle Fiander,et al.  THE EFFECT OF ENGLISH-LANGUAGE RESTRICTION ON SYSTEMATIC REVIEW-BASED META-ANALYSES: A SYSTEMATIC REVIEW OF EMPIRICAL STUDIES , 2012, International Journal of Technology Assessment in Health Care.

[23]  B. L. Beattie,et al.  Aging 2.0: Health Information about Dementia on Twitter , 2013, PloS one.

[24]  Huan Liu,et al.  Data Mining in Social Media , 2011, Social Network Data Analytics.

[25]  Covert research and adult protection and safeguarding: an ethical dilemma? , 2014 .

[26]  Peter J Pronovost,et al.  The Potential of Twitter as a Data Source for Patient Safety , 2016, Journal of patient safety.

[27]  M. Farella,et al.  A qualitative analysis of orthodontic-related posts on Twitter. , 2014, The Angle orthodontist.

[28]  C. Lyles,et al.  “5 Mins of Uncomfyness Is Better than Dealing with Cancer 4 a Lifetime”: an Exploratory Qualitative Analysis of Cervical and Breast Cancer Screening Dialogue on Twitter , 2012, Journal of Cancer Education.

[29]  Jennifer L. Fisher,et al.  Who gives a tweet: assessing patients' interest in the use of social media for health care. , 2012, Worldviews on evidence-based nursing.

[30]  H. Skirton,et al.  Can I get a retweet please? Health research recruitment and the Twittersphere. , 2014, Journal of advanced nursing.

[31]  Svetha Venkatesh,et al.  Data-mining twitter and the autism spectrum disorder: A Pilot study , 2014, 2014 IEEE/ACM International Conference on Advances in Social Networks Analysis and Mining (ASONAM 2014).

[32]  D. Moher,et al.  Scoping reviews: time for clarity in definition, methods, and reporting. , 2014, Journal of clinical epidemiology.

[33]  C. Marton Consumer health 2.0 in Canada: tweeting about cancer , 2014 .

[34]  M. Salzmann-Erikson Virtual communication about psychiatric intensive care units: Social actor representatives claim space on Twitter , 2017, International journal of mental health nursing.

[35]  Svetha Venkatesh,et al.  Using Twitter to learn about the autism community , 2015, Social Network Analysis and Mining.